Tracey Carr1, Lorna Arcand2, Rose Roberts2, Jennifer Sedgewick2, Anum Ali2, Gary Groot2. 1. Community Health and Epidemiology (Carr, Sedgewick, Ali, Groot), University of Saskatchewan, Saskatoon, Sask.; Patient Partner (Arcand), Whitecap, Sask.; Gwenna Moss Centre for Teaching and Learning (Roberts), Centre for Teaching and Learning (Roberts) and College of Medicine (Groot), University of Saskatchewan, Saskatoon, Sask. tracey.carr@usask.ca. 2. Community Health and Epidemiology (Carr, Sedgewick, Ali, Groot), University of Saskatchewan, Saskatoon, Sask.; Patient Partner (Arcand), Whitecap, Sask.; Gwenna Moss Centre for Teaching and Learning (Roberts), Centre for Teaching and Learning (Roberts) and College of Medicine (Groot), University of Saskatchewan, Saskatoon, Sask.
Abstract
BACKGROUND: Although disparities in cancer rates, later diagnoses and lower survival rates between Indigenous and non-Indigenous people have been documented, little is known about how Indigenous patients with cancer encounter the health care system. We explored perceptions and experiences of Indigenous patients with cancer and their families to understand better how 2 key concepts - trust and world view - influence cancer care decisions. METHODS: In this patient-oriented study that included participation of 2 patient partners, qualitative data were collected from Indigenous patients with cancer and their families using an Indigenous method of sharing circles. The sharing circle occurred at a culturally appropriate place, Wanuskewin Heritage Park, Saskatoon, on Sept. 22, 2017. The first patient partner started the sharing circle by sharing their cancer journey, thus engaging the Indigenous methodology of storytelling. This patient partner was involved in selecting the data collection method and recruiting participants through snowballing and social media. Trust and world view were employed as meta themes to guide our examination of the data. In keeping with Indigenous methodology, interview transcripts were analyzed using narrative analysis. The themes were reviewed and verified by a second Indigenous patient partner. RESULTS: There were 14 participants in the sharing circle. The 2 meta themes, trust and world view, comprised 8 subthemes. The meta theme trust included mistrust with diagnosis and Western treatment after cancer therapy, protection of Indigenous medicine and physician expertise with treatment recommendations. The world view meta theme included the following subthemes: best of both worlds, spiritual beliefs, required to be strong for family and importance of knowing Indigenous survivors. INTERPRETATION: This study displayed complex relations between trust and world view in the cancer journeys of Indigenous patients and their families. These findings may assist health care providers in gaining a better understanding of how trust and world view affect the decision-making of Indigenous patients regarding cancer care. Copyright 2020, Joule Inc. or its licensors.
BACKGROUND: Although disparities in cancer rates, later diagnoses and lower survival rates between Indigenous and non-Indigenous people have been documented, little is known about how Indigenous patients with cancer encounter the health care system. We explored perceptions and experiences of Indigenous patients with cancer and their families to understand better how 2 key concepts - trust and world view - influence cancer care decisions. METHODS: In this patient-oriented study that included participation of 2 patient partners, qualitative data were collected from Indigenous patients with cancer and their families using an Indigenous method of sharing circles. The sharing circle occurred at a culturally appropriate place, Wanuskewin Heritage Park, Saskatoon, on Sept. 22, 2017. The first patient partner started the sharing circle by sharing their cancer journey, thus engaging the Indigenous methodology of storytelling. This patient partner was involved in selecting the data collection method and recruiting participants through snowballing and social media. Trust and world view were employed as meta themes to guide our examination of the data. In keeping with Indigenous methodology, interview transcripts were analyzed using narrative analysis. The themes were reviewed and verified by a second Indigenous patient partner. RESULTS: There were 14 participants in the sharing circle. The 2 meta themes, trust and world view, comprised 8 subthemes. The meta theme trust included mistrust with diagnosis and Western treatment after cancer therapy, protection of Indigenous medicine and physician expertise with treatment recommendations. The world view meta theme included the following subthemes: best of both worlds, spiritual beliefs, required to be strong for family and importance of knowing Indigenous survivors. INTERPRETATION: This study displayed complex relations between trust and world view in the cancer journeys of Indigenous patients and their families. These findings may assist health care providers in gaining a better understanding of how trust and world view affect the decision-making of Indigenous patients regarding cancer care. Copyright 2020, Joule Inc. or its licensors.
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